Back to "real life"

As I sit here and reflect on the last couple weeks and transition back into "real life" I am truly humbled!! Hospital life is tough, and it can be frustrating, CF is definitely something you can't fight alone. Having a support system is so important when it comes to facing any battle, no matter the size. 

I am blessed beyond measure to have the support system that I do.... From the medical staff, my CF team, my CF family, to all of you that follow my journey, my amazing friends, my wonderful family, and to the two that started it all and that have been with me every step of the way, my parents. You ALL play such a huge part in my life and continue to keep me going time and time again. 

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and joined the fight.

I fight so hard day in and day out, not just for myself but for ALL of you. These last couple weeks have served as a good reminder why I fight so hard. My numbers weren't really where I wanted them to be when I left the joint this time around. I left at 27%, numbers are so frustrating and I try not to pay to much attention to them, which is easier said than done. 

The most important thing is that I feel better, my mucus is beautiful, and I am HOME!! Healing at home and being in my own environment makes me feel like I'm practically cured. ; ) 

I am confident when I go to my hospital follow up appointment I will see that 30 again. I am going on 7 weeks now of the full dose of Orkambi, I am noticing lil changes and I am still very hopeful. 

Thank you from the bottom of my heart for all of your support. I'm not sure you know how much it truly means to me. You ALL make fighting CF that much easier, and for that I am forever grateful. Breathe out Love! Xo❤️

Orkambi

Although it may not be easy, there are times  where you just have to be okay with not knowing what will happen next... 

For the first time in a long time Orkambi gives me hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I still have a lot of things I want to do here... I love my life. 

Will Orkambi be the right drug for me? Will it help me get off oxygen? Will it thin out my very thick mucus? Will I see my 40th birthday? Will I soon need a life saving double lung transplant? These are all questions I ask myself all the time. 

I have asked so many questions and I have read countless stories of everyone who has started Orkambi before me and the truth is everyone has had different experiences. We just don't know the answers to all of my questions because we simply won't know if Orkambi will help me until I give it a try. 

I have lived a very blessed life, having the opportunity to take this drug that I have waited my whole life for is just one more blessing I can add to my very long list. I am happily grateful for everything life has thrown my way and beyond grateful for all of you. I'm not sure if I have ever been more nervous about something, so if you have time or if you think about it if you could send some love, positive vibes, prayers or anything in between my way it would be greatly appreciated. 

As I swallow my first dose on Wed Sept 23, 2015 I was and continue to be focused on visualizing a positive outcome with minimal side effects. My heart is filled with hope that I will come out on the other side of these next couple weeks with stronger lungs and deeper breaths.... and most of all hope that I can stick around here just a lil bit longer. 

Sending you all so much love and from the bottom of my heart thank you, thank you, thank you for your continued love and support, you truly keep me going! So here we go.... Cheers to Orkambi and getting some answers to all of my questions. 

Breathe out Love! Xo❤️

Just Love

"And in the end, we were all just human... drunk on the idea that love, only love, could heal our brokenness."  

Hard to believe it was 14 years ago. A day that started out with so much hate, finished with so much love. We all came together, we were all ONE. From first responders to all those who lost their lives we will never forget. This day 14 years ago forever changed us ALL in some way. 

Never take anything for granted, love a lil more, and live life to the absolute fullest. Remember that where there is hate, there will always be LOVE, and LOVE will always win; it will heal our brokenness. 

Breathe out Love! Xo❤